Saturday, January 16, 2010

Hut On Fire?

A dear sister in Christ (thank you Mary Ann) sent me this story.

"The only survivor of a shipwreck was washed up on a small, uninhabited island. He prayed feverishly for God to rescue him. Every day he scanned the horizon for help, but none seemed forthcoming.
Exhausted, he eventually managed to build a little hut out of driftwood to protect himself from the elements, and to store his few possessions. One day, after scavenging for food, he arrived home to find his little hut in flames, with smoke rolling up to the sky. He felt the worst had happened, and everything was lost. He was stunned with disbelief, grief, and anger. He cried out, 'God! How could you do this to me?'
Early the next day, he was awakened by the sound of a ship approaching the island! It had come to rescue him! 'How did you know I was here?' asked the weary man of his rescuers. 'We saw your smoke signal,' they replied.

The Moral of This Story: It's easy to get discouraged when things are going bad, but we shouldn't lose heart, because God is at work in our lives, even in the midst of our pain and suffering.

Remember that the next time your little hut seems to be burning to the ground. It just may be a smoke signal that summons the Grace of God."

When I sit and think about our hospital stay the last couple of days and then getting this I wonder if it was exactly that. God sending the doctors smoke signals to let them know that Eli is not only suffering physically with a heart condition, but emotionally more than they understood. They believe he is suffering from PTSD. This time we will be getting help. They sent us home with a hippo with chest tubes since I am pretty sure that is what bothers Eli the most. Chest tubes hurt. There is NO medication that takes the pain away. They hurt coming out even more. In the CICU (Cardiac Intensive Care Unit) they have more control over what they give to take out the chest tubes. They actually have the option of giving them medication to knock them completely out. Unfortunately for Eli his body seems to put a lot out through the chest tubes and because of that they don't usually come out while he's in the CICU. Usually he is on the floor. Because he is on the floor they are limited and cannot give them the medication they should be. They don't move them and they don't have the equipment to intubate if needed. So Eli remembers the chest tubes last time and is terrified. We knew he remembered the chest tubes we just didn't realize how horrified he was. While we were in the hospital the last couple of days we had all our pre-op appointments. So instead of pre-op appointments on Wednesday we will be going to see Child Life Specialists instead. They will start working with Eli to help in preparation and work with him throughout his stay. When we leave we will find someone to work with at home to help him cope. The hippo was sent home to help us start working with him. He does really well with medical play and that is really how we have gotten him to the point of allowing some tests to be done. God is working. I know He is. I just need to remember the next time my "hut" seems to be "on fire" God may be sending smoke signals.

Hebrews 4:16
"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need."

Eli and Dakota using play therapy. Unfortunately the masks are because Dakota has a cough and I am trying to keep Eli healthy.
Play Therapy


Hippo's Chest Tubes
Chest Tubes

Hippo's IV

Tuesday, January 12, 2010

Change of Plans

So I was going to introduce everyone through my eyes when I started this, but I think God has a change of plans for me. I just felt like I've needed to come here and get some things out and as I try to find the time to introduce everyone I feel like I'll never get to posting the other "stuff". As I mentioned before when I first thought of doing a blog it was because I wanted to encourage moms and dads of children affected by autism. Then when I actually gathered up enough courage to start, it was because of the growth God has given me lately and I wanted to encourage others to grow as I have.

Eli is my miracle of God. There is no other way to look at it. I am ashamed to admit some things and this may anger some, but I feel I have to tell this WHOLE story as I believe it shows that God works in mysterous ways. It's no secret that I have always wanted a girl. So back when I first found out Eli was a boy, I was really disappointed. I thought he was my last baby and therefore my last chance for a girl. I didn't understand all that He had planned. If I had really been paying attention and kept my focus on God I would have seen. However, I also know that part of God's plan was my disappointment. You see after I found out he was a boy the doctor put me on anti-anxiety medication. That medication is linked to heart problems, specifically abnormal pressures in the heart. It was this abnormal pressure that God used to SAVE Eli from leaving me. He knew it, but I didn't. After Eli was born we didn't know he had a heart problem. He was actually born with three heart problems: a coarctation of the aorta, a VSD (hole between the left and right ventricle of the heart) and his PDA didn't close. The PDA didn't close because of the abnormal pressure. The doctors told me back then that if his PDA had closed Eli wouldn't be here. Thank God he is. The doctors also said that those medications they "believed" only could cause issues in the first trimester, but I know that is not true. In fact not long ago a mom and dad lost their baby boy who didn't develop heart problems until sometime between 20-30 weeks gestation and this was without medication. Add in the medication that is known to cause heart problems and well you do the math so to speak. As we all know that is NOT the first trimester so heart problems can develop after the first trimester. So I believe part of Eli's problems were caused by the medication, but the big issue, the coarctation, he still would have been born with. Therefore if I hadn't taken the medication he would have died because his PDA wouldn't have stayed open. That sounds so confusing but it really is how things were.

After Eli's first surgery we were sent home. I told them they were sending us home too early. They did surgery on Monday late (weren't done until almost midnight) and they had made the decision Wednesday they were sending us home. One week to the day we were discharged we ended up back for an additional seven weeks. During those seven weeks his heart recoarcted. If we had been at home who knows what would have happened. His VSD also closed. They were not expecting it to close let alone close so soon. After those many weeks in the hospital they didn't think he would have any other problems. In my mommy heart I knew better.

Back in January 2009 they discovered that he had aortic stenosis. He wasn't born with this. If he did not have the original heart problems I wouldn't have been followed by cardiology and we wouldn't have known about the aortic stenosis and now the mitral valve issues.

God has plans. There is so much more to say, but I want to get this posted and get this out there so if another mom is going through this she can know that God is in control. There is hope through our Lord and Saviour Jesus Christ the Great Physician.

Friday, January 1, 2010

A is for Angela

So as I start this blog I think it's important that people get to know all of us individually (at least through my eyes) just a little. So since my name is the first letter of the alphabet I'll have to go first.

I was raised with four brothers and no sisters. My parents wanted a girl for a long time. Of course they were always grateful for the children God gave them, but they were hoping and praying that He would bless them with the daughter their hearts desired. So in 1972 He blessed them with me. It seems to be a hereditary thing for my mother's side of the family to have mostly one gender of children. When they do have children of the opposite gender, there tends to be only one. So I should have known the course my life would take. I can only think that if I'd been paying attention to Him that I would have taken things much better throughout my life and not made some of the mistakes I've made. Mistakes that I'm too ashamed to put in writing. But throughout all the mistakes I've made my parents were faithful too me, loving me unconditionally through it. I am so grateful for that and I believe it's made me not only a better person, but a better parent. That is how God is with us. He loves us in spite of of all our mistakes. What a testiment to Gods love my parents portrayed. I have so many traits from each parent both good and ones I'd like not to have (thanks for the knees dad). I'm grateful for these traits though as my parents get older and some day (hopefully not any time soon) go to be with the Lord. They are something I will always hold in my heart and will help me remember my parents. Some traits I can't really tell who I got them from and other's I really wish I had inherited. One of these traits is my mother's gift for creating all things crafty. My mom tends to be the kind of person who make something that looks like it needs to go into the garbage and make it look like it is worth millions of dollars. It amazes me. I want to learn how to do some crafty things like make bows, make necklaces, and scrapbook. However, I guess I'll have to stick with the things I can already do well like clean, organize, and my strong determination to get a job done until I figure the others out.